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    Old 03-13-2005, 01:52 PM   #1
    mainman2c
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    could it be lyme?

    I have been sick for almost 2 years now and I have seen many doctors all of whom have not found out what is wrong with me yet, this has been extremely frustrating for me and I am suffering a great deal. Almost 3 years ago I believe I was infected with herpes or some other STD as I had lesions and blisters on my genitals, I never received treatment for this as it went away after a month or so, and I never really gave it any thought after that as it never came back again. Then a year later I started to have pain in my right testicle which was pretty severe and I felt two small nodules which were outside of my testicle, I then went to see a doctor as I was worried this may be cancer or something after an evaluation I was told it is not cancer so I should not worry, and that it is most likely pockets of sperm which happens and is not a threat. After this I still had pain, and I took Ibuprofen for it and it seems to have helped, the pain sometimes goes away completely and then comes back. Then after a few months I noticed that my groin area would hurt and I started to have lower stomach pain, I didnít pay to much attention to it as it was not to painful. I started to notice that I would feel very tired all the time and that I would always feel extremely thirsty which was odd but I did not see a doctor yet. Then about 6 months after the testicle pain I had sever stomach problems, such as diarrhea blood in stood and vomiting, I also had my lymph nodes were enlarged I started to feel joint pain, and stabbing and electrical shock feeling all over my body, this lasted for a few days and I finally did see a doctor. The doctor I saw could not find anything wrong with me from the blood work performed he then referred me to a gasterenterologist who diagnosed me with stomach ulcers, I received treatment for my ulcers with PrevPak and I did not have any major stomach problems after that.
    After my stomach treatment I still had sever pain all over my body and I also started to have pain on the lower left hand side of my body, it was found that I had an enlarged spleen after having an ultrasound and my doctor could not find out why, but after a while I had a cat scan of my abdomen and my spleen looked normal again. The pain that I feel all over my body seems to have spread from my abdomen to my neck to may hand and my legs and feet, it feels like something is crawling under my skin, I have twitching and a cold burning sensation that occurs all over as well. I have had multiple blood test done and Doctors have been unable to pin point what is going on, I was even told that there is no reason why I am feeling like this, this made me feel even more frustrated and doctors kept wanting to prescribe me antidepressants which I have taken but have not helped at all. I have seen a neurologist, infectious disease specialist as well and neither could find a problem. I did test positive for herpes, but was told that could not be causing the problems I am having, this makes me wonder because I have read that some of the symptoms I have are similar to that of herpes with a secondary bacterial infection, but I am no expert and was told that could not be an issue. I then switched to another doctor after seeing a doctor for a year with no luck at all, when switching to the new doctor I did not tell him about my previous experience with the other doctor as I felt that I would just be going down another dead end, so in despair I told him this was a new situation. I thought by doing this that the doctor would start from scratch and maybe find something the other one did not, so far no luck again. When switching doctors I was prescribed Valtrex 500MG to see if that helps, this is hard to say because sometimes it feels as if it is helping and sometimes it does not, I have been taking this for a little over 2 months now.1 My condition has slowly been getting worse and worse as time has gone by. I even wrote a letter to my new doctor about this, this is the letter I wrote to him about one episode I have had.

    ****
    It seems like whenever I get in to see a doctor, I donít always remember everything that I want to convey regarding my symptoms. Therefore, I am writing you in advance of my next appointment (it appears inevitable at this time) with the following list of symptoms.

    I have been having very serve issues lately, which seems to have gotten worse. Last week from Wednesday to Friday, I felt very ill. First I started to feel tingling in the back of my head something I have never felt before, and then I started to have my left and right twitching. I then started to feel extremely dizzy and the room felt like it was spinning this lasted for about 20 seconds or so, after about 10 minutes or so, I started feeling pain along my spine mostly up towards my neck area and sharp stabbing pain in my lower back. I felt some tingling all over my spine and I felt a strange sensation, certain spots on my spine felt cold and then I started feeling cold spots all over my body, this lasted for a few hours.

    After the pain in my head and spin I started feeling tingling sensations all over my body, on my forearms my legs and my cheeks and so on, it almost felt as if something was crawling on my skin. I then started to have sever gum inflammation and I felt sharp burning pain all over my body. My eyes started to feel extremely irritated and I felt sharp prickly pain above my eyelids like I was being stabbed with a needle multiple times. Te irritation was very server in my mouth and eyes and I also felt like my face was totally irritated as if I was sprayed with pepper spray or something. This was followed by sever pain throughout my body I felt burning sharp pain running through my legs my hands, my face my chest all over, I felt totally incapacitate at this point I went home took some pain killers and I felt so dizzy I went to sleep.

    The next morning on Thursday I woke up and I felt not to bad at first I then felt pain on the bottom left side of my stomach and severe burning stabbing pain across my head and neck area and my hands hurts when I moved them. I then noticed that I had two small dark red spots under my skin on both forearms, this really worried me. I then also noticed that if I touched certain areas of my body by just poking them slightly with my finger I felt major pain, it was like sore spots all over my left and right side ob my abdomen, close to the bottom of the ribs. If I touched the back of my ribs on the lower right back side I felt sever pain and a feeling of soreness but I did not notice any color change or anything. That entire day was spent with pain all over my body and some irritation but not as bad as the first day. I also tried the allergy medication to see if that at least helps the irritation and itching so far it has not helped but I am still taking it.

    Today 11/29, I feel a little better but I have noticed that my fingers have hardened up again and I feel a strange sensation of pressure on the back and top right side of my head and I feel very disorientated and I still feel the sharp burning shooting pains all over my body. I have also noticed small pimples that have appeared on my and forearms legs and back, but they went away after a few hours. I still feel the strange cold sensation on my body, sometimes it feel like a drop of water running across my skin. My joints hurt a lot and I hurts even when I walk, I even feel pain in my testicles.****end****
    All of the symptoms I described above change from time to time, and I do not always feel really sick sometimes I feel a lot better, it seems to go through cycles. I then visited him and had more testes performed all of which do not show anything once again, it seems that the blood tests always show only slight abnormalities. I also visited a dentist for my gum pain and I was told that I have a severe case of periodontal disease, and I am going through treatment with them now. One thing that did stand out to me is that the dentist prescribed to me doxycycline 100mg and when taking this it seems to have helped slightly, my fingers have even soften up and the pain in my ears have lessened, it seems to have helped throughout but only marginally. Since I stopped taking the doxycylcline my pain and irritation did worsen slightly reverting back to how I felt before taking the antibiotics. I have also noticed that the right side of my face head and ears gets extremely hot sometimes, especially my right ear and this will last for a few hours then go away, this is sometimes followed by ear and gum pain. I also think that my spleen my be enlarged again as I have pain and a sense of pressure on my lower left side of my abdomen close to my ribs. I also feel soreness and burning pain all over my body especially on my ribs, chest, groin, knees and forearms. I also feel pain in my chest on the middle left side as well, this is a new symptom I started feeling. I also noticed that on some nights I feel extremely hyperactive and have a hard time sleeping and the nest morning I feel extremely tired and my pain and irritation is very severe for the next few days. I also feel a strange crunching fizzing noise that seems to happen from the back of my head this happens rarely maybe once a day for a few seconds. I have also seen a rheumatologist, she also ran some more tests which show nothing again, one thing she did prescribe to me is an anti-inflammatory drug since she did notice that doxycyline did help, I have been taking this since 12/14/04 so far I have noticed it has slightly helped but not as good as the doxycyline. What I have noticed is that PrevPak and Doxycyline did ease a lot of my pain but did not totally cure me, maybe I need something stronger.
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    Old 03-13-2005, 02:56 PM   #2
    cjFTWORTH
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    Re: could it be lyme?

    whoa...

    mainman2c, I so hear your frustration, desperation. In-between the symptoms of herpes, ulcers and gum disease, you ran off a MANY of the bizarre symptoms that can come and go with lyme! And much of them, the non-specific stuff, that has sent so many with lyme from doc to doc to doc with only scripts for anti-depressants and comments such as, 'it's got to be in your head - nobody can feel this bad and still be alive', kind of crap.

    Is it lyme? I don't know. Could it be lyme? Yes. You've listed off many physical and neurological symptoms of lyme. With the title of your post, I'm sure Ticker, our much loved lyme guru will come along and help you out with a Lyme Literate Medical Doctor 'LLMD' recommendation.

    So sorry for your trials and do hope you can get to the bottom of what ails you. With your symptoms, I would think a visit to a LLMD and testing through Igenex or other well qualified lab would be well in order. I am actually one of the lucky ones. I think I've had lyme for 5 years or so, but when my symptoms came to a peak in this last fall, I quickly realized the battle was mine, and it was this board got me on the right track in knowing that I had to get to an LLMD if I was to rule out lyme, at least.

    Same thing, weird symptoms and docs not even wanting to hear 'the package'. First, the gall bladder, and 'stay on your meds', then psoraisis, and... you got it - 'STAY ON YOUR MEDS, you loon!'. So it was those with lyme that first listened.

    Others will come along and post. What area of the country do you live in, if you haven't already mentioned it?

    Hang in there and don't quit digging for the truth.. Blessings, cj

    Last edited by cjFTWORTH; 03-13-2005 at 02:59 PM.

     
    Old 03-13-2005, 03:08 PM   #3
    ticker
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    Re: could it be lyme?

    Hi mainman2c. I am sorry you are dealing with so much. I know it is frustrating being so ill and not being able to get answers. Do not give up, you will find out what is wrong.

    Lyme symptoms can migrate in the body and the intensity can wax/wane like you describe. To confirm or rule out Lyme disease, it is very important to see a knowledgeable doctor. No test is completely reliable and many doctors do not understand this. Ticks can also transmit several co-infections. Many people who have Lyme are co-infected, so it is important to be tested by a Lyme reputable lab.

    If you tell me where you are located, I will tell you of the closest knowlegeable doctor to you that I know of.

    Hang in there okay?

     
    Old 03-14-2005, 11:14 AM   #4
    mainman2c
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    Re: could it be lyme?

    Thank all of you for your responses, I live in the Washington DC metro area I ahve been seen by about 5 doctors so far and some have been trying but seems like everyone is clueless. I even had this one doctor say that "there is no reason for me feeling sick", and then he put me on antidrpessants which did nothing, tlak about frustration. Any information that can be provided I would greatly appreciate it, thank you.

     
    Old 03-14-2005, 11:40 AM   #5
    mainman2c
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    Re: could it be lyme?

    I had one more question regarding lyme, as sometimes I feel alot better than other days sometimes I feel perfectly fine and feel great for like 3 days or so then I feel sick again. The sypmtoms are always mixed when I feel sick again Is this possible with lyme?

     
    Old 03-14-2005, 02:46 PM   #6
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    Re: could it be lyme?

    Well, when I feel good, I really feel good. That was yesterday. Today all my bodyaches are coming back. I've been off abx. for about 3 weeks. But I'm dragging myself to karate again. The instructor's wife has healing powers and promised to pray for my son and I today or Wed. It worked on an injury I had a few months ago, so I'll give it a shot. I just don't know how she can cup her hands around all of me.

    Watch out for those antidepressants. I guess it depends which one it is.

     
    Old 03-14-2005, 06:01 PM   #7
    ticker
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    Re: could it be lyme?

    Hi mainman2c. Yes you can feel better some days and bad on others with Lyme. Many people who have Lyme saw several doctors before getting diagnosed.

    There is an excellent Lyme doctor in your area. His name is Dr. Kenneth Singleton. I believe he recently moved his office. He is either in DC, Baltimore, or has an office in both cities. Hopefully, someone will post which location he is at.

    I hope you can get an appointment with him. Keep us posted!

     
    Old 03-14-2005, 08:43 PM   #8
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    Re: could it be lyme?

    Welcome mainman2c.

    I was also examined by many doctors (9 of them) who scratched their heads and said that I am healthy as a horse. One doctor told me to take vitamins, another prescribed antidepressants, another said I may have brain tumors.

    I never expected to have to play such an active role on my quest for a cause for my increasingly failing health, nor did I expect to have to do my own research. I always viewed doctors as the subject matter experts- they have the answers.

    Hang in there. Don't give up.

    Mickie

     
    Old 03-15-2005, 07:53 AM   #9
    mainman2c
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    Re: could it be lyme?

    Hello,

    Thank you all for your input, I will try and locate Dr.Singleton and make an appointment with him. I will definately update you with my progress.

     
    Old 03-15-2005, 09:11 AM   #10
    mainman2c
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    Re: could it be lyme?

    Is the doctor Dr. Kenneth B. Singleton and part of national health associates? As I have found this doctor online but I am not sure if he is the same one you are refferring to.

     
    Old 03-16-2005, 10:38 AM   #11
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    Re: could it be lyme?

    One more question I have is what specific blood tests should I request from my doctors?

     
    Old 03-16-2005, 03:23 PM   #12
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    Re: could it be lyme?

    The Lyme doctor will know what tests are best. I would imagine he will order the Western Blot and tests for all the co-infections.

     
    Old 03-17-2005, 06:21 AM   #13
    mainman2c
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    Re: could it be lyme?

    Back to my old question

    Is the doctor Dr. Kenneth B. Singleton and part of national health associates? As I have found this doctor online but I am not sure if he is the same one you are refferring to.

    Thanks again Ticker you have been very helpfull.

     
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